While others might have given up decades ago, 80-year-old Diane remained steadfast in her quest to find the best treatment for her faulty bladder. After teaming up with an equally persistent urological surgeon, Diane has now reclaimed her continence and her vibrant, active lifestyle. She speaks to MARIA WHITMORE.
Eighty-year-old Diane* from the Melbourne bayside suburb of Hampton has an insatiable thirst for knowledge. If she’s not at the library researching her favourite subjects (such as archaeology, psychology, anthropology or the latest neuroscience or medical research) she’s reading books or watching documentaries on the subjects.
It is thanks to Diane’s inquiring mind that she can now live her life fully and completely dry – something she feared would never be the case 16 years ago.
Diane, a retired nurse and mother of six, began having problems in her mid-40’s, after having a hysterectomy to treat endometriosis.
“I was going through eight heavyduty incontinence pads a day. It was just coming out all the time ” – Diane.
Back then, her urologist’s diagnosis was stress incontinence, but Diane had her doubts. “I told them it was not necessarily only when I sneezed; it was all the time. But that’s what they said.”
Doctors performed a colposuspension, a major operation to treat stress incontinence, which lifts the bladder neck by stitching the lower part of the front of the vagina to a ligament behind the pubic bone.
Although the procedure initially improved her urinary incontinence, over time the problem reoccurred, and then “things deteriorated quickly” when she reached her early 60s.
By now, Diane was experiencing severe urinary incontinence, only able to pass small amounts of urine, with ongoing leakage between toilet visits.
“I was going through eight heavy-duty incontinence pads a day. It was just coming out all the time,” she said.
The impact on her life was significant. “I stopped going to yoga classes; I used to go swimming, but had to give it away because I didn’t want to pass urine in the pool. I used to go the sauna but stopped that too.”
Diane was also forced to give up much of her volunteer work, which included visiting nursing homes and delivering library books to the aged.
Even simple tasks such as supermarket shopping became major strategic exercises. “I’d have to go to the toilet beforehand, shop as quickly as I could, then I would have to leave my trolley at the service desk and go to the toilet again before I went to the checkout queue.”
Diane was constantly excusing herself for pad changes when she was out with family and friends. “Or I’d be getting ready to go out, and would think, ‘I can’t face this’, or ‘I can’t wear light-coloured clothes’, and often I wouldn’t go,” she said.
Further compounding her problems were the frequent urinary tract infections, which were becoming increasingly resistant to all but three antibiotics.
Eventually her doctor referred her to Melbourne-based urological surgeon Dr Karen McKertich, who asked Diane to complete a bladder diary. She also conducted a fluoroscopic urodynamics test, which would take pressure readings of her bladder and urethra using computerised equipment and X-rays.
Dr McKertich diagnosed Diane as having a bladder that didn’t contract properly to empty, a condition known as an acontractile bladder causing chronic retention.
“The underlying problem is with the muscle of the bladder and/or the nerves to the bladder, which are responsible for an effective bladder contraction, which should normally empty the bladder completely during urination,” Dr McKertich said.
Diane was started on a regime of twicedaily self-catheterisations; one first thing in the morning, and the next about 12 hours later.
The results were immediate and dramatic, with Diane having little or no leakage between catheterisations.
Dr McKertich said that catheterisation works by mimicking the process of normal bladder emptying. It also prevents the bladder from becoming over-distended, which further exacerbates bladder-emptying problems.
“The more women persevere, the more they’re informed, the more they will ask the right questions” – Diane.
“Self-catheterisation also helps by reducing the number of urinary tract infections caused by a continual stagnant pool of urine sitting in the bladder, from which bacteria cannot be cleared. It also improves overflow incontinence, caused by leakage of urine (like overflow from a full dam) due to the continual high volumes of urine in the bladder,” Dr McKertich said.
After a few months of self-catheterisation, Dr McKertich was hopeful Diane’s bladder had recovered enough to fill and empty on its own.
“Diane’s bladder function had improved and the amounts drained were minimal,” Dr McKertich said.
Diane ceased self-catheterisation and managed for the next few years or so, with only occasional leakage incidents. However, her bladder-emptying function gradually deteriorated, and by the time she saw Dr McKertich again early last year, she had very little bladder control.
Again, Diane was asked to complete a bladder diary by Dr McKertich, who was surprised by what it revealed.
“She said, ‘oh dear, it’s continuous’. She couldn’t believe how much I was leaking,” Diane said.
After another fluoroscopic urodynamics test, Diane was recommenced on her twice-daily self-catheterisation regime.
Since then, Diane’s world has opened up, and she has become an active participant in life again.
An early riser, Diane gardens early every day, walks or takes public transport wherever she goes, and enjoys social and family engagements without giving her bladder a moment’s thought.
“It’s absolutely wonderful. I now have my life back. I can’t tell you how highly I respect Dr McKertich. She’s tenacious. I told her, ‘I don’t know how to thank you’.”
Dr McKertich is full of praise for Diane’s positive can-do attitude, and her willingness to undergo the challenge of self-catheterisation, which she describes as “understandably, initially, a very confronting treatment”
“ I can’t tell you how highly I respect Dr McKertich. She’s tenacious” – Diane.
“Diane has taken her health issues in her stride and has been willing to try different assessments and treatments. The pay-off for investing time and effort, and for being actively involved in her treatment, has been a very gratifying improvement in her quality of life,” Dr McKertich said.
Diane, who brings a list of questions to all her doctors’ visits, recently phoned the National Continence Helpline (1800 33 00 66) to learn the latest medical news on her type of bladder disorder, in preparation for her most recent visit to Dr McKertich last month.
Diane encouraged others to be persistent, open-minded and informed about their condition’s causes and treatment options.
“Women with a condition like mine could almost give up on it. I know it’s taboo to speak about personal things, but the more women persevere, the more they’re informed, the more they will ask the right questions,” Diane said.
Actively participating in her health care enabled her to be as active and self-reliant for as long as she possibly could, she said.
“And look how much extra time I’ve got being able to do all the things I do.”
*Not her real name
Dr Karen McKertich